Even though Alzheimer’s isn’t a rare disease, it’s a close cousin
A caregiver notes some connections as an awareness day approaches
You may not be aware that BioNews is a “leading online health, science, and research publication company” that, as described on its homepage, “exists to improve the lives of patients living with rare diseases.”
BioNews columnists either have the disease they write about or they’re caregivers or family members. A few years ago, I was ecstatic to receive an invitation to create my BioNews column, “Treading Dark Waters.” It’s inspired by my mother, who passed away from Alzheimer’s disease. I was honored to share her caregiving until that time.
Why isn’t Alzheimer’s a rare disease?
By “supporting the rare patient journey, every step of the way,” BioNews gives people with rare diseases and their caregivers a voice. There are about 7,000 rare diseases that affect 1 in 10 people in the United States; 300 million people have them worldwide. Among those rare diseases are cystic fibrosis, pulmonary hypertension, Friedreich’s ataxia, and more.
In the United States, a disease isn’t considered rare if more than 200,000 people are affected, according to the federal Orphan Drug Act, passed in 1983. By contrast, more than 6 million people in the United States are diagnosed with Alzheimer’s, the most common form of dementia, so by definition it isn’t rare. This made sense to me, as I’ve had firsthand experience with the disease and know many people diagnosed with it.
Rare diseases and Alzheimer’s
Alzheimer’s and rare diseases have similarities. Many rare diseases are genetic, for instance, and Alzheimer’s disease can have a hereditary component. It’s not guaranteed that I’ll develop Alzheimer’s disease because my mother had it, but it does place me at greater risk. People with more than one first-degree relative with the disease have an even higher risk of developing the disease.
People often know someone with either Alzheimer’s or rare diseases. You may not have Alzheimer’s, for instance, but there’s a good chance you know or have known someone who does. The same is true for rare diseases. Many of us know someone with a rare condition: a family member, neighbor, co-worker, or friend with multiple sclerosis, sarcoidosis, or another equally frightening disease.
Without immunity
Healthy people can develop a rare disease at any time in their lives; of the rare diseases that are genetic, 70% are diagnosed in childhood. The risk of developing Alzheimer’s increases with age, though it’s not a natural function of aging. It’s estimated that nearly 13 million people will receive an Alzheimer’s diagnosis by 2050.
Perhaps the greatest commonality between people with dementia and those with a rare disease is the fortitude and courage to fight the good fight and build awareness. Awareness drives attention, which catapults funding, to deliver effective treatments that may one day result in cures.
Feb. 28 is Rare Disease Day. This month and always, “Treading Dark Waters” stands in support and awe of people with rare diseases.
Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.
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